Searching for relief after a near death experience

I almost died when I had my first severe flare up in January of 2021. My family doctor didn't know what was going on and called my neurologist in Little Rock, Arkansas. I was 2 hours away and they wanted to transfer me by ambulance, but there weren't any beds. It took 3-4 bags of intravenous immunoglobulin (IVIG) and I couldn't move my extremities. I thought I was in the I.C.U for just 3-4 days, but truth is, it was a couple of weeks.

Coding in the hospital

I heard my room number called over the intercom for the hospital and them say code blue. I felt the chest pain and my breathing slowing down but didn't put 2 and 2 together until they said CODE BLUE. Then I took 3 of the deepest breaths I could take and then heard Code Blue Canceled. That was the scariest time of my life.

I was diagnosed with Muscular Dystrophy when my son was 2. My muscles just started getting weaker and weaker. Six months after being diagnosed, my entire family of 5 had to move in with my husband 's parents, so that he could work and I had help for me and our 3 children.

Still searching for relief

But January of 2021 was my worst that I ever was. Having Restless leg syndrome and my feet being completely still was terrifying. And not being able to move my arms, hands, or head. I wasn't moving but I was in extreme pain. STILL AM!! I have been to pain treatment centers and have felt like I am being tortured instead of helping!! I was supposed to get a thing put in my body, (like a tens unit) to stop the pain but they refused because I was too depressed!! And I said yeah, I'm depressed because of the pain!! So he would rather give me a medical marijuana card. And not give me the one thing that might give me a drug free, pain relief object inside???